posted
Hi new member here, I'll try to give a quick history of my story.... Everything started about 8 years ago ( I was 30) when I removed a tick off my left arm and really thought nothing about it. I would say within two weeks I started having flu like symptoms but just figured I had the flu. Within a month I started feeling major fatigue, joint pains ( everywhere) and foot swelling and pain which continued to get worse. I got to a point where I couldn't tie my own shoes due to the joints in my hands and even could barely move cotton sheets with my legs while sleeping. Went to my family doctor ( I know I waited too long ) and told him my story, although hesitant he order the Elisa test and of course it came back negative. He then sent me to a rheumatologist, the only issue with the blood test he found was a high sed rate. I was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome. The overall the joint pain diminished after 5 months but this whole issue has effected my personality and mood and desire to do anything.
After 7 years of struggle and being pushed on anti depressants and now testosterone injections for my now out whack levels I decided to get the IGeneX test which show negative on both the IgM and IgG but with some red flags.
I would love to hear everyone's opinions on the results: IgM: 30 kda ++ 31 kda ind 34 kda ind 39 kda ind 41 kda ++
IgG 31 kda ind 34 kda ind 39 kda ind 41 kda + 58 kda +
I'm sorry for the long, rambling post and please share your thoughts.
Posts: 3 | From Pennsylvania | Registered: Mar 2014
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posted
You are in the same situation as many of us. You are right, its very suspicious but not definitive. After 8 years, the immune response is typically quite reduced and strains effect both the test results based on antigens used and immune response over time...
I had 2 choices.
Begin long term antibiotic treatment empiraclly, just as they did with antidepressants etc...
or do some more testing to try a get a better feeling as to its necessity and your access to them and your doctor's willingness.
Retest after some treatment as it sometimes stimulates a new response as does time.
Long term antibiotics helped me with some symptoms but fatigue and pain are not among them.
My initial Igenex test results were similar to yours. I chose to do more testing so I felt I was on the correct or at least a good probability course with antibiotics.
I wasn't necessarily looking for a CDC positive but wanted to see what tests that use different antigens in their Western Blot looked like. Strain divesity can cause the Western Blot to show different bands with different WB antigen basis and treatment and time can cause variations.
Both Igenex and Stony Brook use 2 strains in their test so are the labs I used. I also had both run a C6 peptide. I figured that by looking at the combination of results, I could decide to make a more informed decision.
I was C6 positive at both. Many people here don't like the C6 because it does miss strains and does decay over time but if you are positive, its valuable. If you are negative, it probably means nothing by itself.
I have gotten multiple Western Blot tests at each lab, one each before antibiotics and then while on and after. The C6 was positive before and after.
When I combined all my Western Blots, I had 6 antibodies but never did they all appear in the same test. I also had IND's which went positive after antibiotics. My IND's and + seem to go up and down.
So IND's can and do sometimes go positive after some treatment and or time. And + can drop to IND.
So I was in your exact situation except it was closer to 10 years and different test results. I chose treatment after seeing the sum of IGenex WB + C6 and StonyBrook WB + C6. The positive C6's are not necessary but it gave me more confidence. It was 5 antibodies over 2 tests that gave me confidence. After treatment, I actually had 1 more antibody.
Over the many WB I had + for 31, 34, 39, 41, 58 and 66.
So its a process since there are no tests that are guaranteed. Good luck.. Hope you find my experience helpful.
Here is a good discussion of the Western Blot Science and its crazy history by IGenex.
"In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.
[---- from DR C's update from 2005 --- ----The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.----]"
And, another quote:
"Many would say the " +/-" equivocal ["IND"] bands are not significant. The problem I have with that, is that there are "-" negative bands. The lab has no trouble calling some bands negative. So they must be seeing something when they put "+/-" at some bands.
The only thing that makes sense, is that there is a little bit of that antibody present in your serum. If the "+/-" equivocal is reported on the borrelia associated bands, it is usually significant, in my clinical experience. This is a strong clue that I am on the right track."
So, as you can see, you have quite a few significant bands. (I consider your "ind" bands as weak positives.)
I believe that any good lyme doctor would diagnose you with lyme if you have lyme symptoms and these test results.
Also, a severe case of fibro is nearly always lyme disease.
So, my dear, I would say that you have lyme disease.
See this quote from the Burrascano Lyme Treatment Guidelines. It tells how a doctor is supposed to diagnose a person with lyme disease:
"DIAGNOSTIC HINTS
Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms. The entire clinical picture must be taken into account, including a search for concurrent conditions and alternate diagnoses, and other reasons for some of the presenting complaints.. . .
Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy." (page 6)
I suggest you read and study this document to get an education on the illness that you have. You may also want to look at the cheklist on pages 9-11. The more symptoms you have, the more likely it is lyme disease. Given your history of a tick bite and then a flu-like illness I consider the diagnosis of lyme as elementary as 2+2=4.
People often don't get a rash with their first exposure to lyme. But, after that, your body should respond with a rash if you are ever bitten again with an infected tick. That is good to know once you have had lyme disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Did you take either the antibiotic "challenge" or the herbal "challenge" ( a week or so of certain herbs or 5 days of I think doxy) PRIOR to the Igenex IgG?
This kills some Bb and the PCR test(complimentary from Igenex with the IgG & IgM tests) picks up some parts of the dead Bb and shows those bands. You don't have to have the antibodies which a lot of us with long-term Bb do not have many of.
Igenex will send the suggested challenges protocols to your doctor. I actually have them saved in WORD if you want my copy.
My Bb was long-term (from 2009), and I found my bull's eye rash while researching the internet to understand extreme symptoms last summer, and asked for the Igenex IgG test, but also found they suggest a challenge before taking the test. I took the herbal challenge, and tested positive by Igenex.
I had, like you, a few IND's in the 30's, but had 2 that were positive that were double-starred.
If you want to show a positive test, you can take the challenge and then retest the Igenex IgG.
Also you can take the HNK1(CD57)test only from Lab Corp, since yours is long-term Bb, and if your CD57 marker is under 60, it should indicate a long-term Bb infection. Bb is the only known infection that depresses that marker.
I agree with the others, that you had so many IND's of the significant bands, that you almost certainly have lyme. But if you need a positive test for insurance purposes, these may help.
Posts: 254 | From North Carolina | Registered: Nov 2013
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
It's 1 month of doxycycline to do a challenge test. You then do a full IgM/IgG panel for lyme.
Posts: 2839 | From California | Registered: Jul 2012
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In my original post I failed to included that I had an appointment today with a llmd.
Seeing the results and hearing my whole story regarding the illness he is almost 100% sure that I had/have Lyme's and at least the bartonella co infection. He suggested that we do doxy (100mgs 2xday) and Biaxin (500mgs 2xday). I quickly agreed to try anything he recommends, basically I just want my life back.
He warned me that it could be a long road ahead due to the length of the infection but he is confident that we can get this taken care of. What a great doctor, very caring and was truly interested in my story and didn't rush me in and out.
Thanks again for your responses!
Posts: 3 | From Pennsylvania | Registered: Mar 2014
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